Disability and Carers Benefits Expert Advisory Group minutes: August 2017

Attendees and apologies

Present

• Jim McCormick (chair) (JMcC)
• Shaben Begum (SBe)
• Tressa Burke (TB)
• Fiona Collie (FC)
• Chris Creegan (CC)
• Lucinda Godfrey (LG)
• Sarah Hammond (SH)
• Jim McGoldrick (JMcG)
• Ewan MacDonald (EMacD)
• Alan McDevitt (AMcD)
• Angela O’Hagan (AO’H)
• Frank Reilly (FR)
• Andrew Strong (for IW)
• Carol Tannahill (CT)
• Billy Watson (BW)
• Sally Witcher (SW)

In attendance

• Nicola Radley (Secretary) (NR)
• David Taggart (note taker – Secretariat)

Apologies

• Sandra Black (SBl)
• Etienne d’Aboville (Ed’A)
• Sarah Hammond (SH)
• Ian Welsh (IW)

Items and actions

Introduction

JMcC welcomed everyone to the meeting. He was pleased to announce Sally Witcher’s appointment as Deputy Chair to the Group.

He reported that he had met the Minister for Social Security on 22 August and had the opportunity to discuss the Group’s first advice note, which had been sent on 17 August.

Scrutiny

JMcC had received a formal letter from the Minister asking the Group to provide advice on Scrutiny. He was clear that the Group was not being asked to become a scrutiny body, rather to provide recommendations and options on how legislative, and broader, scrutiny could be taken forward over and above scrutiny of primary legislation in the Scottish Parliament, given that the continued role of the existing UK bodies (SSAC and IIAC) has been ruled out. The letter would be circulated to the Group.

JMcC suggested to the Group that a seminar could be convened over the autumn, with the Industrial Injuries Disablement Benefit Advisory Group, and possibly other reference Groups.

DACBEAG3/310817/Action 1: Work with other reference groups to convene seminar on scrutiny
Action for: Secretariat / Chair
Action by: Seminar to take place by end Autumn

The Group discussed the role of Parliament in legislative scrutiny, and the need to make recommendations on whether new arrangements should be statutory. There is a presumption that legislative scrutiny arrangements would cover secondary legislation and guidance. One Group member commented that stakeholders may have a preference for scrutiny arrangements to be set out in primary legislation.

The importance of the current role of SSAC was commented on, and the complexity of the work they carry out was noted. The Group briefly discussed whether, and where, the necessary expertise existed in Scotland.

While the Group’s overall remit was clear, covering both legislation and delivery, the scope of the scrutiny function itself was questioned – in particular whether this would include a role to look retrospectively at whether legislation has delivered what was intended, and whether it should take a wider view of the impact of policy and practice, i.e. beyond regulations. The Group preferred to take a broad view of scrutiny in its initial consideration of this topic, and narrow this down if that is what is required later.

The Group noted that any options it recommended would need to be able to be continuously evaluated and feedback given, to prevent a fixed system with unintended consequences that may take another legislative cycle to change.

The Group were mindful that it would have to consider phasing and sequencing, as options under the new system would have to be developed while existing arrangements are still in place. Risks attached to not having new arrangements in place in time would need to be recognised.

The Group also recognised the need to consider the resources likely to be available across the course of the parliamentary term, and apply the principles of proportionality, effectiveness and value for money to their recommendations. It was suggested that the final report and resources produced by the Budget Process Review Group may be useful in informing this.

SW asked the Group if they would find it useful to have a short paper summarising current arrangements, role of SSAC etc. They agreed this would be useful.

DACBEAG3/310817/Action 2: Short paper setting out current scrutiny arrangements and role of bodies to be commissioned / produced
Action for: Deputy Chair / Chair / Secretariat
Action by: End September

The Group welcomed the Minister’s request to consider scrutiny and agreed to take forward its considerations via a smaller group.

DACBEAG3/310817/Action 3: Small group to be established to give more detailed consideration to scrutiny
Action for: Chair / Secretariat
Action by: End September

Automatic Entitlement and Award Duration

Assessment principles

SW started the discussion by referencing the principles set out within the Bill, identifying that some of these were clearly directly relevant to the topic of assessment. However, it was suggested there may be more to add specifically regarding assessment. She asked the Group to consider assessment principles, and what qualities an assessment process should have. The principles identified by the Group included the following:

• Fair
• Seen to be fair (i.e. a trusted process)
• Evidence based
• Linked to advice and advocacy
• Equitable
• Upholding the principles of dignity and respect
• Linked to rehabilitation and support
• Linked to continuous improvement
• Asset / outcomes based (i.e. focused on what people can do, not what they can’t; people not having to ‘prove’ how ill / disabled they are)
• Looking at the whole person
• Simple to navigate
• Transparent
• Upholding good customer service
• Based on a relationship of trust
• Leaning towards self-assessment
• Not medicalising (people or processes)
• Mindful of psychosocial aspects and people’s participation in society
• Inquisitorial (i.e. ensuring all the right questions are asked and not placing the onus on the applicant to formulate evidence)
• Having a recourse to justice

The Group also considered that some of the principles being flagged up as desirable, e.g. a reduction in face to face assessments, could be a reaction to the current system. It was felt that the personalised approach which can be taken, for example in home visits, could be valuable. It was recognised that there were potentially some tensions between principles of equity and consistency, and personalisation.

In beginning to consider automatic entitlement and award duration, the Group recognised the challenge of identifying reliable proxies with regard to extra costs incurred by disabled people, as a medical diagnosis would not necessarily have a direct correlation with a particular degree or severity of functional impairment, or the cost related to that impairment. Although costs are not necessarily directly contingent on either medical condition or functional limitation, they can be a consequence of barriers (social, environmental, economic) as per the social model.

The Group acknowledged the role played by the social model, i.e. external and environmental factors and recognised that this varied with people’s circumstances, but that there were risks around the use of a biopsychosocial model where the onus is put upon the ‘attitude’ of the disabled individual to overcome barriers.

Automatic entitlement and award duration

The Group discussed the principle of automatic entitlement, i.e. whether it should be granted in any circumstances. The Group were in agreement that it should, in certain circumstances, and identified the following issues:

• Broad agreement that it was fair that it should be limited to certain conditions
• Clarity was needed on how the current list of conditions was arrived at
• Clarity was needed on data sources, how often these are updated and how far Scotland can be disaggregated from GB-wide numbers
• The difficulty of defining and assessing whether a condition was ‘severe’ was discussed, in particular in relation to behavioural difficulties
• Need for clarity about how to categorise (if just focusing on the nature of impairment, bearing in mind other factors apply when it comes to extra costs) in terms of degrees of severity, degrees of likely change, whether fluctuating over longer periods of time or on a daily or weekly basis
• End of life issues – there should be automatic entitlement, acknowledging the difficulty estimating life expectancy in conditions with a less predictable path

The Group established that the terms used currently were defined in regulations and case law. It was agreed that a short paper would be circulated summarising this, along with other issues raised under this item.

DACBEAG3/310817/Action 4: Document summarising definition of current automatic entitlement and duration of award terms, and also structuring Group discussion around this to be produced
Action for: Secretariat / Group members / officials
Action by: End September

The Group discussed what should be the trigger for a review. An option for this would be when people self report a change, although a risk around potential overpayments was recognised with this.

The Group were clear that the purpose of a review should be to ensure everything appropriate was being done for the person, not to take benefits away from them. Assumptions should not be made that people will never regain lost functionality; changes in circumstances, fluctuations in conditions and technology developments can all lead to changes. Likewise, it should not be assumed that people who self report as being in recovery do not need an assessment.

The Group welcomed the paper they had received on this item, which set out work carried out so far by the Duration of Awards short-life project, a sub-group of the Ill Health and Disability Stakeholder Reference Group. The Group felt that it would be useful to share the discussion points and meet the chair of that workstream.

DACBEAG3/310817/Action 5: Set up meeting between chair of Duration of Awards short-life project and chair of Group and / or other member(s) of Group
Action for: Secretariat / Chair
Action by: If possible to take place before final meeting of short-life project on 13 September

Assessment Workstream

JMcC thanked AMcD for agreeing to lead the assessment workstream, despite other commitments. A workstream was to be established, which some Group members would sit on, but which would also need to draw expertise from other areas, such as Allied Health Professionals and people with lived experience of the process, and engage with Experience Panels.

Due to AMcD’s other commitments it was suggested that a co-chair was appointed to ensure this work was taken forward initially. A number of Group members set out their interest in joining the workstream, and the Group was in agreement with the co-chair approach. Group members had a number of suggestions about the range of expertise and stakeholder perspective which should be brought to this workstream, which will be taken into account when setting up.

A draft workplan had been drafted for this workstream, but the tasks and timing were subject to agreement once the workstream is formed.

AMcD set out his position that although his expertise lay in medical evidence, he was very clear that assessment encompassed much more than this. Any potential concern that his chairing of this workstream could give rise to the incorrect perception that the Group believes assessment to be primarily a medical issue could be addressed by the co-chairing approach. Another co-chair and other workstream members would ideally include people who use and have experience of benefits assessment, and reflect the ethos of co-production.

He set out some of the issues around medical evidence, e.g. the current weight given to it in the decision process. There were also issues around the role and opinion of doctors, when balanced against their relationships with their patients, the time available to them, and their lack of objective knowledge about people’s day to day functionality. The Group discussed the importance of weighing up medical input alongside other sources of assessment evidence (including self-assessment feedback and available administrative data) into the process.

AMcD spoke about the role of data and systems. GP IT is being re-procured on a 10 to 15 year cycle so once requirements are set, change can be slow. Medical records are not designed to define disability, and mainly set out what interventions were made, rather than the types of information that would be sought at assessment, i.e. diagnosis, severity, prognosis.

It was recognised that research and review would be needed in order to come up with best practice, and that resources would be needed for this. Existing and planned Scottish Government work, for example on international comparison of assessment approaches, would be able to be drawn upon.

It was also recognised that a differentiation should be made between looking at improving existing assessment processes for current GB benefits coming to Scotland, and proposing new assessment processes and criteria for redesigned benefits in future.

DACBEAG3/310817/Action 6: Initiate setting up of assessment workstream. Identify co-chair and Group members to sit on workstream. Identify external expertise needed
Action for: Secretariat / Chair / members
Action by: In position to confirm co-chairs at Dignity and Respect event on 14 September

The Bill - more detailed consideration and issues log

JMcC set out the purpose of the issues log in tracking issues raised and those yet to be considered, noting their importance and timescale, to help ensure that the Group developed its own distinctive voice.

He said that the Minister for Social Security had offered the Group a meeting, which was currently scheduled for 31 October in Edinburgh. This would be in advance of her appearance before the Social Security Committee.

The Group discussed issues which they believe should be added to or expanded upon in the log, either for future advice or further discussion with a view to giving advice. Those raised included:

• There should be more in the Bill on principles, e.g. the principle of support and accessibility: no one should lose out on their entitlement or be unjustly penalised due to failure to provide them with appropriate support
• There should be more detail on overpayment
• Need to consider whether there should be more in primary legislation on the setting up of the agency
• There should be a statement of overall aim
• More consideration is needed on research and analysis, not just the Experience Panels, but building learning, measuring outcomes and evaluation into the process from the outset
• Short term assistance – the Group need to consider the issues around this, as there are potential unforeseen consequences
• Appeals – need to emphasise reducing numbers by getting things right first time

The Group discussed its collective process of deciding which issues were its job to raise, and where it had something distinctive to say, rather than amplifying issues pursued by individual members’ organisations. Ongoing discussion was needed to ensure the Group was providing holistic and balanced advice in response to Ministerial requests, as well as identifying issues of longer-term significance.

AoB and next meeting

JMcC reminded members of the Policy Scotland/Carnegie UK Trust Dignity and Respect event taking place on 14 September, which all members were invited to, and would give an opportunity to discuss the recent report published by the Equality and Human Rights Commission (EHRC) Scotland and written by a team at Ulster University.

A skills and knowledge map and biography statement for Group members would be developed, and a template would be issued to members in the next few weeks.

DACBEAG3/310817/Action 7: Circulate skills, knowledge and biography template to Group members
Action for: Secretariat
Action by: End September

• A register of risks would be developed.

DACBEAG3/310817/Action 8: Develop and circulate register of risks document
Action for: Secretariat
Action by: End October

• SW raised that the Concluding Observations of the UN Committee’s examination of the UK Government and devolved administrations regarding their implementation of the UN Convention on the Rights of Persons with Disabilities were to be published and may be of relevance to the Group.

• There was a request that Bill consultation responses from the organisations represented on the Group were collated and circulated.

DACBEAG3/310817/Action 9: Circulate consultation responses from organisations represented on the Group
Action for: Secretariat
Action by: asap after meeting

• The workplan and an updated action tracker would be circulated to the Group
• The Group agreed to consider its public facing communications
• The next meeting is on 30 November